Scoliosis patient stories

Scoliosis Patient Stories

Amal story

I was diagnosed with soliosis at the age of 12. A doctor who is specialized in a stomach problems send me to a stomach x-ray. He noticed that there is a curve in my spine. He asked me if I did stand straight. I wasn't really sure what to say, because I was quite young, so I thought that I didn't stand straight. At the end the doctor advised us to go to a spine specialist doctor to make sure everything is alright. We didn't take it serious, and we walked out and forget about it because really there was no sign on me shows, that I have spinal deformity. My posture was normal and had no pain at all.

On my early 16's I start getting the problems. My main problem was the back pain and pins and needles. I have been to the GP. The doctor sent me to an X-ray, and they found out that there is a slight curve on my lower back spine, and he called it lumbar scoliosis. He told me about my back problem, but he had no solution for it at all. The doctor said to me that he will keep on eye on me and do observations every 6 months, just to make sure that is not getting worse. Also, I was informed by the doctor that they can not do a surgery because my curvature is not that big, and advised me to take pain killer when needed.

After that my problem was getting worsen and even effected me with my studies. I had to be away from school for a while because of the pain I had. Then I went again to my GP who referred me to a physiotherapy. I had several sessions of physiotherapy with no result. I still had a back pain. I suffered all these years to find a solution for this. I have been to many doctors, but sadly none of them helped. My problem was getting worsen day after day.

Suddenly last year I started getting problem with my posture with limited movement. I got so stiff and not able to do normal physical movements. Even my curvature increased. i have been back to the GP. The doctor again told me that they can not do anything. I was leaning forward, more and more, and my posture was awful for a 20 years old girl. I didn't know what to do. My family, specially my mom, was suffering a lot with me. She tried to find a solution, which can help me. I used to sit in front of the internet for many hours to find any possible solutions for scoliosis.

I found SCOLIOSISINLONDON centre, which I am going to at the moment. This is a special exercise based treatment designed for people with spine deformity. I have made an appointment with the consultant Joanna. On a consultation she explained to me everything about the spine and my problem. She told me I need an intensive treatment course, 5 hours of exercise every day to increase my flexibility and my posture. Also, Joanna told me that after treatment I have to keep doing these exercises to keep my result.

When, I started the course, it felt so hard. But at the same time it was so entertaining. I was feeling so happy of me doing exercises, actually the right exercises for my spine, which can help me to correct my posture and increase flexibility. Working with Joanna was so niece. She is a nice lady. I had so much fun and pain at the same time. The pain was muscles pain, but it was good because I knew the muscles started to work and that's why I am getting the pain. My posture started to get better and I looked straighter. My movement and flexibility increased from the day I started until now. So it was a good job. Hopefully before I leave I will be proper flexible and my posture will be straight.

Amal

My daughter'sscoliosis story (March 2009 - October 2009)

My daughter is now 12 years and 4 months old, and has never had any medical problems before. During the month of March 2009 I was taken aside by her dancing teacher after a dance lesson. She asked me had I noticed anything about her posture?

When I looked blank, she told me that she appeared to be leaning over to one side during the lessons. She said maybe it was just a symmetrical thing, but it could also be a condition called scoliosis, something that I never even heard of before, and maybe take her to the doctor and ask him to check it out. The only thing that I had maybe noticed was a slight hump on her right-hand side near her shoulder blade, which I just imagined was her growing, and as she is quite slender was more noticeable than other girls as they are growing into young adults.

When I got home that night I told my husband to have a look and mentioned the word scoliosis. The next day we both looked this up on the Internet, and although it did not look too bad, it looked like a classic care of scoliosis we immediately made an appointment to see the doctor. The doctor made a referral to the nearest children's orthopaedic department at a local hospital, for an x-ray of a typical right thoracic curve. The time spent waiting has been the most worrying and upsetting part. It took 2 months to get an appointment at a local hospital when they took an x-ray there. I was slightly relived that the x-ray showed an angle of 33 degrees, because I had looked up everything on the Internet and ever though this angle was not good, it was at a treatable stage.

2 months later we had still not received an appointment to see the spine specialist and from reading up on this condition I knew that it could progress very quickly in an adolescent girl. My daughter was then 11 years and 10 months old. After returning to my original doctor at our local surgery, I pleaded with them to chase up the appointment with the specialist before things got any worse. We finally received an appointment for July 2009 four months after scoliosis had first been noticed by a dancing tutor.

After x-rays had been taken we went trough to see the specialist who told us that it did not look good and measured an angle of 50+ degrees. We sat there shocked as he told us that he could perform an operation in 2 months time before thing progress even more. I had been reading upon everything to do with scoliosis and felt that this was a big operation to just agree to, without trying other treatment first. The specialist told us that nothing else would work, but he would prescribe a brace to try hold the curve until we saw him again in 3 or 4 months time, this was under my insistence, with him being very reluctant.

The brace is typical NHS one, which my daughter wears for approximately 16 – 18 hours per day and more at the weekend with a bit of blackmail, but I feel does not give a good correction which should be an essential for a scoliosis curve. It also took 6 weeks to be fitted. Since the appointment in July, I have been on a mission to find anything that may help the curve. I know in Europe it is treated with exercises (Schroth) and bracing giving good correction. After looking on the internet I found some Schroth therapy in London and made an appointment to spend two weeks there over the October school holidays. Although 4 weeks are recommended school and work demands make that impossible. I am hoping to do the therapy in 2×2 week courses, and in between will do the exercises with my daughter after observing her at hard work with Joanna.

The next specialist appointment is due in Manchaster in November 2009. I am hoping that there will be no worsening of the curve and even maybe a slight improvement after all the exercises. There is nothing worse than watching your daughter's body twisting before your eyes. One of the next things that I plan to do is to get a better brace giving good correction if not too late. I will do all that I can, as the thought at my daughter spending the rest of her life with a spine that has been fused to give limited flexibility. Rods and screws put in to try to hold the spine in place is not something I want to agree to at the moment, as well as the time spent off school and to give up her dancing for the next 6 or 12 months is not something that she wants to do either.

(November 2009 - February 2010)

The two weeks spent in London with Joanna has helped my daughter by using specific Schroth exercises for the type of curve. Both have worked very hard and Joanna's hard work, dedication and commitment to her job made the exercises seem more like fun than physio work. She now continues to work on her exercises at home, 5 times per week for 30 minutes. After re-visiting the spine specialist in November 2009 we were pleased to see the x-rays and to see that the curve had not progressed any further since July 2009, despite the specialists' prediction about this type of high thoracic curve.

We returned to Joanna during the half-term of February 2009. She was very flexible with the hours that we could attend and due to a lot harder work we managed to finish the total hours recommended with the encouragement and motivation. Even we had time to visit a few of London sights. We have had another brace fitted since the last appointment, but still that this is not giving the correction required and merely holding this curve in position. The next goal is to pursue a Cheneau brace that does give correction. My daughter continues to do her prescribed exercises daily to stretch and strengthen her spine and other exercises to help her, her posture looks much better.

Due to all the training, she is standing and looking more confident. The uneven muscles on her back appear to have evened out more, and her shoulders appear to be straighter. I can highly recommend this type of physiotherapy for anyone with a scoliosis condition, do not use a wait and see approach.

Thank you Joanna

Sharon /mother/

Back problem story

I have suffered from bad posture since my late teens and it got gradually worse. I decided to do something about it at 31 years old. I looked up on search engine for spinal clinics which specialize with my problem and came across the Scoliosisinlondon. I had a consultation which was very helpful and Joanna explained what was wrong with my posture. I booked at two week course on which I learned to correct my posture through the various breathing exercises. At first the exercises seemed strange, but after a few days I realized the exercises are perfect to solve my problem. I will continue to do these exercises at home.

Michael

The "Three-Dimensional" treatment is a key for success.

At the age of 14, I and my family noticed a visible curvature of my spine. At first my family believed the problem curve would straighten up once again we though the curve only occurred due to lying in bed too much. After seeing a doctor, it was clear that I suffered from scoliosis. My back was in pain and my muscles were weak. At age 16 my pain got worse along with my curvature. I developed a muscular deformity due to my curve which created a hump. At 17, I was in pain and had disgusting scoliosis, which severely affected my posture. I tried a variety of methods on correcting my posture e.g bending down the opposite not knowing that I had 3curves and made it only worse.

My mum had enough and took matters into her own hands and soon got advised that I should see a physiotherapist. Many couldn't help me, but one her name was Joanna Slup. Joanna Slup expalined to me what exactly was wrong with my spine and slowly taught me some of many different Schroth exercises to de-roatate my spine. Still 17 my pain is gone, but my deformation of spine still visible but improved. I have learnt that my scoliosis will only improve if I keep working hard and that the "Three-Dimensional" treatment is a key for success.

Alexander

Alice story

At the age of 16 I was leaning over and my dad noticed something wasn't quite right. So I went to the doctor who explained to us that I had idiopathic scoliosis and told us to ahve an X-ray. He said it wasn't very serious but we should go to a specialist. The X-ray came back with a Cobb angle of 55 degrees this sounded serious to me. I was astonished as nobody had noticed it before, even when I was on the beach less tahn a year before and I hadn't even noticed anything different in the mirror.

The surgeon told me that I need an operation to try and straighten my S-shaped curve, but it is obvious from the look of my back that the scoliosis is a three-dimensional deformity, and there is a lot of rotation as well. I have a lot of faith in my consultant but some of the things he said astonished me: He told me wait a year to do anything about it as nothing would change even though I'm still growing. I noticed a difference in just 6 weeks after my appointment. The other is that he said that carrying a heavy rucksack on my D of E expedition would not be a problem. I don't know whether this is true but I didn't want to take the risk. I was advised that if I was walking for a long period of time my poor posture and a very heavy rucksack on my back, the curve would very possibly increase. The first time I noticed the scoliosis was when I came back from a previous expedition 2 months before.

My mum who is very emotional about the subject did lots of research into the condition as we and many other people have never heard of it before. I don't understand, why people in this country are so unaware of scoliosis as it is not uncommon, especially in girls around my age. This is when she came across Joanna and Scoliosisinlondon. After the initial consultation we book a four week course at the beginning of the school holidays, but as I didn't want to wait any longer we also booked a few 2 hours sessions prior to the treatment. These were a great help because it gave me an idea what doing the exercises at home would be like and also gave me a head start with the breathing exercises and basic principles of the exercises.

The 4 weeks themselves require a lot of concentration and hard work if you really want to get the most out of it. I found having positive attitude made it a lot easier. The atmosphere is great as everybody is working very hard by Joanna still makes the 4 weeks fun and enjoyable. My 4 weeks passed extremely quickly. I was so pleasing to continuously see improvements from day to day. It is not an easy process, I found it difficult when I got home every day and even now to constantly think about keeping my correction, especially when I'm tired. The motivation and encouragement that Joanna gives helps tremendously. She is incredibly kind and caring and can always keep an eye on everybody, helping them all at the same time. I enjoyed the experience so much that I am doing another 4 days course with Joanna a week later as I want to be able to achieve even more.

The treatment has also taught me a lot more about the condition and has enabled me to fully understand it. I believe I couldn't have done this by just reading books and researching on the internet. There is so much more to know that I thought possible. I couldn't recommend this treatment more Joanna is very committed and passionate about her job. She always has time for everybody, to answer questions, offer general support and also talk to parents. When I compared the change in just the appearance of my back over the 4 weeks, it was unbelievable to see the difference I had made with a lot of Joanna's help.

It is so rewarding to feel I have achieved something and it makes me more determined to continue to decrease my scoliosis. I hope that with just the Schroth method I will be able to live with my scoliosis.

Alice

Kitty story

Kitty's scoliosis was diagnosed by chance in December 2008 and she had her first consultation at RNOH in March 2008 — that was the first time we saw that she had a double major scoliosis with an upper curve measuring 47 degrees. I got in touch with Joanna after my daughter's scoliosis deteriorated rapidly, increasing by seven degrees in seven weeks. The consultant told us that the only effective treatment was surgery and that without it her condition would continue to deteriorate, and she would be crippled and in constant pain. When we met Joanna she explained that she could work with Kitty and help improve her scoliosis, but that it would not be an instant cure, and Kitty would have to work hard. Kitty was clear that she didn't want surgery, and neither did I, but after six months of being told there was no possibility of change without surgery I was losing hope. I suggested Kitty starts a course in August, during her school holidays. Joanna explained that the sooner she started the more effective it was likely to be. Joanna was very flexible regarding the program, so that Kitty could still attend some lessons every week, and be at school for several key exams. Joanna took measurements and photos and talked simply and directly to us about what we could expect to achieve. She made it clear that the Schroth approach was not a quick fix, that it needed commitment and that education and self-awareness about the condition was an integral part of the programme. She showed us before and after pictures of people she had worked with and talked about difficulties that could come up. Kitty asked me to come with her for the first week, but by the end of the first day it was clear that I was a distraction. Joanna talked through all the exercises, demonstrating them and working alongside Kitty. After the first week Kitty went on her own. I had been worried that it was too much to ask of a 13-year-old girl and expected her to become demoralized and complaining, which didn't happen. Although she was tired at the end of every day, she kept in good spirits, which was a tribute to the way Joanna worked with her. After just over two weeks of Schroth we went for a second consultation at Guys and St Thomas'. The x-ray indicated that her upper curve had reduced from 54 degrees to 29 degrees. We cried with astonishment and joy. The hard work was paying off. The consultant was very surprised. After just over two weeks of Schroth we went for a second consultation at Guys and St Thomas'. The x-ray indicated that her upper curve had reduced from 54 degrees to 29 degrees. We cried with astonishment and joy. The hard work was paying off. The consultant was very surprised.

At the end of the course Joanna gave Kitty a sheet listing exercises, which she had made sure she understood, by testing her over the four weeks. She worked with Kitty to demonstrate the exercises and talked through the equipment she would need to complete them.

When I look at Kitty's back now it looks very different to what I could see before the exercise regime. Her back is straighter, her posture is better, and she is confident and happy. In particular her shoulder blades don't stick out any more, and she is stronger and slimmer too. She has grown a centimetre. She is doing exercises every day ans now has wall bars in own room to help her.

Kitty's mother Sally

Joanna Słup

MSc, MCSP, HCPC